Tuesday, September 27, 2022

Prep Mode

 We are in full prep mode for the upcoming Stem Cell Transplant. It's a weird time.

SCT is no picnic. It's a port placed in your body; 5-6 days (I forget) of high-dose chemo and a total of about 3 weeks in the hospital, followed by an isolation period of recovery at home. 

On the other hand, SCT is an option because my scans showed No Evidence of Disease. And that's undeniably good news. 

So it's the same old choice: what do you focus on: the hard path ahead or the good news? 

Seems like an easy choice. But there's so much prep to deal with for the procedure that it's difficult not to tune into those details. The information binder is huge -- chapters of information. And living 50+ miles away from the hospital makes it more complicated. I'm scheduled right now to get my port placed on 11/21 and begin harvesting my stem cells on the 22nd, with admission to the hospital late on the 23rd. But I might need to harvest again on the 23rd, and we won'd know until late on the 22nd.  So complications, right. 

And because I'm going to be out of work for an extended time, I need to file paperwork for a leave of absence and set up accounts and all that crap. More complications. 

Doing a little work as Round 3
chemo finishes up

And there's a whole lot of appointments that I've got to do - lung, heart, blood work, final PET scan, etc. etc. that are being coordinated. And so, yes, more complications. 

We took care of all of that stuff late last week, but the taking care of made it hard not to focus on what lies ahead.

That said, let's remember this: I've got three out of four R-CHOP procedures in the bank. I've tolerated it well. I am in no pain. I have No Evidence of Disease. And after my last R-CHOP on October 11, I'll be looking at a potential period of about five good weeks before SCT.  And I'll be entering SCT in pretty good shape. 

True, instead of Thanksgiving Dinner, I'll be served up a dish of chemotherapy. But as my wise sister reminded me, "One Thanksgiving in the hospital for many more out of it." That's the attitude to take. 


Tuesday, September 20, 2022

No Evidence of Disease

You know it's good news when the doctor walks into the exam room and says excitedly, "Did you see the scans?"

Further proof of good news is when the doctor uses terms like, "Amazing" and "Awesome." And further proof is when the oncologists tell you they were celebrating in the back room.

Yesterday's PET scans after two rounds of chemo revealed no evidence of disease. If you didn't get the point: this is very good news. Of course, just because you can't see it on scans, doesn't mean there aren't the stray cancer cells lurking undetected. So we will continue with two more rounds of chemo (well, now one round after today's treatment) and then on to stem cell transplant (SCT).   

To be honest, I was approaching the scan results with an optimistic win-win approach. I knew that there would be some remission -- I felt too good for it not to be working -- and so my thinking was if it's Partial Remission is good and means we go CAR T and that's potentially easier than stem cell transplant; if on the other hand it was full remission, well that would be good because it's full remission.

But the truth is, it wasn't "win-win'. It was more like "win-do pretty well." And full remission was always the win. The fact that all my lymphoma responded so well to two rounds of R-Chop bodes well for future rounds and for SCT. Nothing, of course, is guaranteed, and SCT is no picnic, but I'm more hopeful that we can put this in the rear view window soon enough.


A picture is worth a thousand words, so here's a before (on the right) and after (on the left) picture of PET scans from August (pre-treatment) and yesterday.  


The following is from this page on Mayo Clinic's site

"The PET scan uses a radioactive drug (tracer) to show both normal and abnormal metabolic activity.he tracer is most often injected into a vein within your hand or arm. The tracer will then collect into areas of your body that have higher levels of metabolic or biochemical activity, which often pinpoints the location of the disease.  Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells."

Note that in the black-and-white images, the "bright spots" are black. So black = tumors = bad. Note that the brain and kidneys and bladder also show up as black because, I think, they have high activity. But that giant mass in the middle is now gone. There's still some "stuff" - my words - around the neck, reduced but visible, but the interpretation is that this could be/is probably brown fat and not residual disease. Again, do you see the giant accumulation of lymph nodes/tumors in the middle? That's gone.   

Thursday, September 8, 2022

Choosing Your Path

 Today was a good day. 

That's the thought that was roaming around my head on Saturday. (Today was pretty good too but more on that later).  In the world of positive encouragement that you often run into in cancer survivorship, it's hard to find something more universal than the mantra: live in the present. It comes in various flavors, the most popular being the notion that you can't control the future, so live in the moment, enjoy it and don't worry about the what ifs. A corollary to that is that a silver lining to a cancer diagnosis is that it makes you  appreciate the now, more than ever. 

Well, I don't know about that. There's some truth to the cliche, I suppose, but I always felt it to be more cliche than truth. To be honest, that's probably because living in the moment has never been my strength. My mind is almost always going -- which makes for wonderful insomnia at times -- and my anxiety gene is a well-honed one. The combination of the two means thinking about the future and the dreaded "what if" is an easy state to drift into. 

But Saturday really was a good day. I mowed the lawn, caught up on some work in anticipation of some tired days ahead, and had an all around normal day on the homestead. For the record, I crashed a bit on Sunday and Monday, but by Tuesday night, I was feeling good enough to start this blog post. That it took me to Thursday night to post it has nothing to do with chemo effects. And by Wednesday, I was back full day at work, I'll take it. 

Yet when I'm having a good day, I sometimes feel that I need to literally remind myself of that, just to keep me on that positive path, and more importantly, to avoid traveling down that other road that darkness and solitude often invites. That particular path is overgrown with weeds and worries; it's a dark and often scary jungle and it leads nowhere.     

It may be hard at times, but I do  think you can choose which path you want to follow. And I'm going to stay on that positive path as often as I can. 

Backyard blogging on a beautiful September
day, with cameo appearance from Rocco
So here we are, halfway between rounds two and three of R-Chop. Based on pathology of my disease, it seems like CAR T-Cell may end up being the prescribed treatment approach. We'll know more after we do PET/CT scans on the 19th, before round three. And yes, I can feel the seeds of scanxiety starting to take root. The battle I fight (and will fight) in my head is to not think about "Will it work? What do we do if it doesn't?" but instead focus on where we are today.

As I sit out here on a beautiful late summer day, I'm managing the side effects okay of treatment and am pretty much pain free with no medications helping me along. And in a week and a half, I expect to be visiting Noah at Lehigh for Family Weekend. 

I like that path.


Saturday, August 27, 2022

Round Two: New Attitude, New Hairstyle

 As I near the start of my second round of r-chop, it's hard to believe that round one was less than three weeks ago. On the day before my first infusion, I had to page my oncologist for some stronger narcotic painkillers. The walk from the waiting room to the exam room on that Tuesday was more a shuffle than a walk. And I had no idea when I would start to feel better. After a long fe weeks, it felt like I was at the bottom of a very steep hill, with little energy and no view of the crest. 

Today, I went out for my second run of the week. Granted, it's about two minutes off my normal pace and less than half the distance, but I'll take it. I worked the full week, at full strength; went out to dinner for Matt's 21st birthday (outside, of course); and, I've got a new haircut to boot, as my hair started to clump out last Wednesday, as somewhat expected. I'm on no meds to speak of and looking forward to getting round two in the books.

Less than three weeks. 

It's good to keep that in mind as I head into subsequent treatments, be it r-chop or whatever comes ahead. That may be an autologous stem cell transplant (some good background info on transplants here) if the r-chop achieves full remission; or it may be Car-T cell Therapy if we only see partial remission. Car-T is a relatively new and exciting treatment option (more on that here.) 

Time will tell which option is the path forward. We'll do scans after round three. Until then, there's nothing to do but wait and see... and remember that a lot can happen in a few weeks.